I fear for DS future and I am afraid that I am not a person

[Livingtothefull]

Today I took my DS out for the day, I wanted him to have fun. He is 14 and in a wheelchair, has cerebral palsy and severe learning difficulties.

I walked across town to do an errand then took him to the restaurant of his choice. He asked for a 'train map' so I took him to the railway station to pick one up. Then I took him for lunch at a restaurant of his choice (DH wasn't feeling well & didn't come with us).

At the end of the meal DS managed to lose his train map. I don't know how, the waitress may have taken it away with the food leftovers or DS may have dropped it somewhere.

DS had a meltdown because he didn't have his map….swore at me a lot. Apparently and unbeknownst to me I am a 'stupid f--ing bitch'. This is after I have bent over backwards to give him a nice day.

I had to go to the bank afterwards which was open, to pay credit card bill. DS picked up piles of leaflets and threw them on the floor, also knocked over the displays and swore at the staff. There was an elderly woman customer there who was shocked, stared tightlipped at me.

I left bank and told DS I was disgusted at his behaviour and while he behaved in that way he would get nothing. DS lashed out at passers by calling them 'f--ing idiots' including small children. I had to dodge passers by whilst walking him home as I was scared of what he might say.

I managed to get him home and told DH what he had done. I told DH I didn't want to be with DS after the way he had behaved, and left DH to talk to him….DH told me to leave as he knew I had had enough. I came back shortly after and DH made DS apologise to me.

Later DH said that I should have talked to DS and tried to understand how he was feeling. I told DH that I understood the point he was trying to make, but I felt that DS should know how much he had upset me.

I now feel extremely guilty for reacting the way I did. DH is a teenager, he is growing up and it is not unusual for teenagers to lash out I believe? And he is stuck there in that wheelchair, is it any wonder he gets angry and lashes out the way he does?

Anyway I don't know why I am posting here. I am having a rant because I am sick of things being so hard. DS behaviour is bad, but it is so so understandable…but I need to find a way to get him to control it. I just can't have him swearing at passers by the way he does when he has a meltdown.

I also feel that I am not really a person. When I try to broach the subject of how hard it is to deal with DS and how potentially socially isolating it is, I can see people's eyes glaze over; they really don't want anything to do with any of this. I feel isolated from my own family because of this, nobody knows what to say to me. I don't blame anyone if eyebrows are raised at this, I am used to not fitting in anywhere.

….xmas PANTO

DH has gone to bed without talking to me. I am so stressed now that I am actually getting panic attacks. Every 10 mins, it is as though my brain can't handle the thoughts in it and it wants out.

I really sorry things are so hard. Did you ever get a GP appointment?

If you don't feel able to go to work tomorrow, don't go. But I suspect you are the kind of person who is really good at their job but just lacks srlf belief.

I wish I could suggest some form of help or support but I am sure you already know what is available and it isn't very much.

I will get nothing much from GP Robert, will have to pay for any support I get.

DH not talking to me this morning. I wonder why I even bother. DS manically excited and won't be calmed down. More shit to clean up before going to work.

How did work go today? Hope it was ok.

Work was OK thanks Robert. I do have a fair amount of stress to deal with though & at the moment I feel a bit of 'imposter syndrome' as though I am having to convince everyone I am a professional & am having difficulty with being assertive enough to ensure people listen to me. My usual ongoing issue of always feeling I am inferior, a step lower than everyone else. What a curse it is. I would much rather err on the side of being overly, unduly self confident…..that would be much more suitable for the life I lead, would mean one less thing to worry about.

DH & I have made it up now so all better. I was overly harsh/critical though on the other hand I had had to deal with a lot yesterday pm while he had a sleep, which is why I snapped. But in the scheme of things he definitely does his share so I did apologise and meant it.

Living I have no advice to give. But I am awestruck at your resilience and strength. It may not feel like it, but you are doing so well.

You're also one hell of a writer.

Have you had any more thoughts about opening up to your family?

Thank you for that JapaneseSlipper, that is such a kind post. I am writing what is in my head, I am sure it is not a particularly riveting read! I am not this self centred in RL honest, I am trying to get things straight in my head and understand things better.

I need to be more honest with my family but don't quite know how. It is silly but I feel that it is a huge step for me & I am worried they just won't understand. I am feeling resentful and short fused lately…not directed at anyone in particular but I worry if things get awkward I may say things that might be hard to take back, I may express myself clumsily & hurt someone's feelings.

Had another evening with DS, he is still OTT excited about his panto trip…..demanding to have the tickets, to take them to school to show off to his friends & teacher. Getting angry when I said he can't have them (no chance, they won't last 5 minutes if he gets his hands on them & then he won't be going). Whining & demanding the tickets, trying to climb up the stairs to get them (& risking breaking his neck so I have to accompany him…..was reading a book but never mind that). Verbal aggression: 'Get me the tickets you bitch!' ('if you can't treat me with respect then you won't be going to the theatre at all!' 'Only polite boys go to the panto'). But I always cave because there is so little he can enjoy so depriving him of treats like this is disproportionate to the 'crime'.

Hours & hours of this after I got home from work. The panto is in 5 weeks so that's how long we have of this….what joy.

Well this morning the school run from hell……

DS woke up 5:45 still banging on about the theatre tickets. Got him cleaned, dressed, breakfasted…..spent his time looking up theatre configuration online (to work out where we would be sitting) rather than eating breakfast ('If you don't eat your breakfast you lose the iPad!'

Got myself ready for work, snatched breakfast. Walked down the road to meet DS school bus for pickup….DS then chose to tell me he needed more supplies for school; ('Why didn't you tell me when we were still in the house before I locked up?')

Waited for bus….and waited and waited in the rain. Texted bus escort, they are stuck in traffic. DS gets stressed. 'Where's my bus?' To passers-by he shouted: 'Do you know where my fucking bus is?'

I tell DS off for swearing so he loses it. School bag thrown into the road (narrowly missing car), while I am retrieving that he rocks back in his wheelchair & nearly overbalances it (he could crack his head open if he did that) so I grab the wheelchair. DS bites me on the arm, luckily through my coat so doesn't draw blood but doesn't do my (cherished, designer) coat any good.

Bus finally arrives, DS becomes as good as gold. I rush back to get school supplies, lock up all over again, rush back to bus and hand supplies over, say my goodbyes and then finally go into work very late.

The morning from hell OP?
It really does sound as if you're working so hard and stretching yourself to the limit? I'm not trying to be critical and I really do get that when we are stressed and stretched to the limit, self care comes a long way down the list. BUT.... if you don't get some level of support for yourself, then you will lose your resilience. I understand that the receptionist at your GPs surgery was a complete waste of space - but I really think you do need to carve out the time to go and see your GP to discuss your mental health? Not meaning to be critical but I can't see that you have actually got there yet??

I also wonder, is it worth talking with the school about help with behaviour management strategies? The fact that DS behaves at school and not with you suggests me that he 'knows' what he is doing. Many children save their worst behaviour for those who they love and feel most safe with - even though it doesn't come over as very loving! Parents really need top rate behaviour management strategies. I have noted how you have spoken about the need to ensure that his behaviour is not frightening for younger children etc. and you are right. It is vital that all children understand what appropriate behaviour is and can manage to control that (as far as they are able). Maybe the school can help - remember, if you want to change someone's behaviour, you do it by varying your own responses / behaviour.

Thank you featherglass. I am trying to get the support but the fact is: support is just not forthcoming. I would know if it were there; it just isn't and I know that I am on my own. I have tried and I know support is not there. I have been to my GP and got nowhere although will try again.

I don't know how to vary my responses. I am worried that I am a narcissist by nature and that I am being forced to lose myself. I am 'the one that has no place'; I don't exist.

I am writing in order to get to a place where writing starts to help. Great tracts of emotional and spiritual excrement & ordure to be negotiated, a lot of words that nobody needs to hear, before I can get to a place where I make sense again. If there were such a thing as 'me' I would be self indulgent in writing this.

I took my twinkle to his favourite restaurant, he had a happy time because the place had a Christmas 'buzz'. My little boy finds it so easy to be happy.

Tonight you sat at the very edge. You were at the brink and looked over; and you asked 'How does one endure the unendurable?'

'Only by not being a person; by not being 'one'. You are not a person; you are just a conduit for pain. You have to get used to the idea that, regardless of the fact that you are one who loves life, regrettably it still hates you back as it always has'.

If life loved me then it would take great joy in loving my DS. I don't understand what he or I have done, to cause life to be so disgruntled with us.

Living when i read this thread when you started it, i have to admit I didn't really 'get you'.

I have 2 sons with ASD & ADHD / PDA.
Im very close to a nervous breakdown. I thinkni might be in tbe middle of one, im not actually sure anymore.

I used to be scared to admit that I couldn't cope. Now I tell anyone thatceill listen. But no one listens. Months dealing with Tge Disabled Childrens Team, still no restpite. No Playschemes are running over Christmas but at £160 for the 2 boys i really can't afford it.

The GP gives me more & more AD.

There is nothing locally.

Both boys are in Special school's. They are in different counties so the holidays overlap so intotal i will have 5 weeks if Christmas holidays. I have 2 dd. If it wasnt for them, I wouldn't carry on.

I will be looking at residential schools for both boys in January. I have no choice. I cant function anymore...its scary.

No one cares. Its all very uncomfortable to listen to...

I really feel for you op.

Sorry for typos. On my phone.

PeppasNanna

Just wanted to say hello and say how terribly sorry I am for the way you feel, how hard life is for you.

I care! I know you mean no-one seems to care in RL, but I am here right now, I am real and I care very much about you even though I don't know you.

I don't have experience of children with disabiliites or additional needs and I can only imagine how incredibly hard it is mentally, physically, emotionally.

I am awake now at 3am because I am having serious marriage problems but fucking hell has this thread put my problems into perspective.

Thinking of you Peppas and Living and all parents of children with LD or any other difficulties and to all parents struggling, especially at this time of year.

Moonriver1 just stated perfectly and beautifully what I'd like to express. Living and Peppas, we wish we could help. You're both very brave in the face of almost intolerable circumstances -- and, please, never ever think that you're narcissistic or selfish for feeling broken and alone. Please let us know what happens; we'll be thinking of you.

What an absolute nightmare situation to have to deal with. I really feel that he could benefit from cognitive behaviour therapy. Its tough being a teenager, it must be a hundred times worse with his medical condition to deal with on top, but his behaviour towards you and other people is not acceptable.
If he wasnt in a wheelchair you wouldnt have tolerated it....
He can get CBT or counselling or anger management on the NHS. The problem is he needs to co-operate for it to really help.

And you need some support as well. Look around locally and online for some carers groups and start there. At least other people in the same situation would know what you are going through and you wouldnt feel so isolated.

Dear PeppasNanna, I am sorry you are going through this. My good wishes go out to you.

Thank you all who have offered their support here. i think what I struggle with, and what a lot of people don't understand, is how little support is out there and how profoundly many people don't want to care, can't afford to care. The very people, moreover, who wouldn't see themselves that way and who would be very insistent that they are in a position of 'love' vis-a-vis DS.

I get prescribed the ADs too. And I get offered counselling but I think 'to what end? To help me adjust to an intolerable life? I don't want to talk about how hard it is; I just want cold hard practical solutions and I won't get offered those'.

When all is said and done, I don't think I am really thoroughly sane either Everyone has their breaking point and I am not sure whether mine has already been and gone.

DH talked today about what it was like for him when DS was born. DS birth warped, marked and ruined me for life, made a bad person of me.However it seems that when DS was born they were even less sparing of DH feelings than they were of mine. It transpires that DH found out about DS disability when the doctor on duty told a bunch of student doctors; also told them (in front of DH) that DS had 'the worst brain damage I have ever seen'.

So I can see why DH gets angry. I wish he wouldn't get angry at me though. I flatter myself that I am part of the solution not of the problem; but I don't know though as I really don't know what I am. Just a fearing and emotionally suffering thing that occasionally gets flashes of anger.

Definitely a thing though; not a person. A person gets to act on the world as s/he sees fit rather than having to deal with a crushing set of circumstances. So I am not a person; I am a suffering thing with a constellation of qualities in tow.

For a non person I talk a lot about myself. It would be a lot better if there were not this suffering, fearful consciousness at the very centre of it all.

I thought that life was planned in a systematic and rational way; that first goes the thought and then the words 'This is what I plan to do….' blazing a trail for the rest to follow. But that is all worthless to me.

Counterintuitively, the very part of me that I most want to protect - the fear - has to go first, and everything else - there is very little else - hopes that the fear blazes enough of a trail to warrant said constellation following on behind.

I am a person who loves life. But i know that life doesn't love me back. It hates DS too; it has let that sweet boy suffer since he was born.

My sweet DS is in bed and fast asleep now. The dear boy is unaware of how much life hates him. One day he won't have us any more; I hope that he will be with good people who care for him.

But I am so scared that he too will be put through the 'emotional suffering' wringer, I had a basinful of that and it did me no good. I don't trust life to have DS best interests at heart.

Of all the difference causes that MN has supported and campaigned for nothing comes close to the suffering on this thread. Can we not as Mumsnetters start campaigning for the practical help and meaningful support these parents so desperately need? I am not in the UK so I don't know what has been done, is being done, should be done etc. But letting families be driven into insanity through lack of care by the rest of us can't continue.

Just saw Olivia's link to This is My Child. What are the practical results of this campaign other them sending things on Twitter - which I do not use?

I know how awful the support system is, but I also know that this is something you can challenge by legal means, and I'm sure you could get legal aid in DS's name for that purpose if necessary.

You suggested back in July that something was happening with regard to a care plan and possibly and Education Health and Care Plan. Is that right? How is that going? Your DS should have a detailed care plan which sets out precisely what support you and he can expect, and if he doesn't that can be challenged. Likewise if support set out in the care plan doesn't materialise, that can be challenged. He should also have a detailed and specific statement or EHC Plan, and again there is help out there in relation to that (I suggest you phone SOS SEN). I know it's really tough having to fight these battles when you already have more than enough on your plate, but maybe it's the only way to improve matters for all of you.

I heartily wish I could fall apart but for DS sake I just can't plus I CAN'T BELIEVE HOW HARD LIFE IS AND I CAN'T SEE AN END TO IT BECAUSE THERE ISN'T ONE.
I haven't been in your position, but I've had crises of my own, and this sounds to me like the beginning of the 'falling apart' you're looking for. It might take years, but eventually you will crack. Why not put this thread, or the main elements of it, to your GP, your son's medics and social workers? You might need help now if you're going to avoid falling apart in a big way.

Living, I have re-read the thread all through (I followed it when it first started).

to you.

I think your thoughts on how you empathise with others are extremely important
"there I was empathising with everyone concerned, fully understanding where each of them was coming from. I just felt, as I sometimes still feel, caught in the middle really, having to explain to each party the other's point of view….in the midst of all that I don't know where I myself stand any more...

...I think that the fact I appoint myself 'Mrs Empathy' in dealing with disagreements or disputes…..find myself over and over in the role of peacemaker. Because I so often understand exactly where people are coming from, put myself in their shoes. I am not saying that I am more sensitive/aware than other people, just that it has become a habit to think this way.

There I was trying to act as a go between to patch things up between my DH & dfamily, WHY did I feel I had to take that on when I had a desperately ill DS, was ill & recovering myself? You would think people would have wanted to tiptoe around me…..but that is not what I remember at all.

I think excessive empathy has a lot to do with the problems I have with assertiveness…I really do understand the other person's position, mostly it is a reasonable position that makes sense to them. It is almost as though I am standing in their shoes myself. So no sooner do they explain their position to me than I cave…..empathy can be such a curse"

I don't think empathy is the right word here. It's more that other people, who should have valued you as an individual, have habitually refused to take on board your 'unendorsed opinion', your individuality, the reality of your life and have instead imposed their own projection onto you.

In other words, I suspect your family are a bunch of narcissists and that you have been their victim, moulded into someone who can put up with insidious rejection since childhood. The only way you feel you have a right to an 'acceptable' existence is if you make your real self invisible and inaudible, hide your real feelings, find expression only in explaining other people's pov, acting as mediator, shielding people from direct contact with strong emotion, including their own, but also shielding them from your strong emotion.

I could be completely wrong, and even if I am in the ballpark I am not sure where that gets you. But there comes a point where a narcissistic family system catches up with you and you know the former way of relating cannot go on any longer, a crisis happens, whether sudden or slow burning, and it has to be resolved.